Tonsils out, tubes in. and Dr. Hickey

Well I guess it's the no news is good news when it comes to my blogging! Not that this is particularly "bad" news, but Kellan is going to have surgery Jan. 4 to have tubes in his ears and get his tonsils and adenoids out. This came about fairly quickly when his ear drum ruptured Tues night/Wed am, only 12 or so hours after seeing the doctor and getting the all clear on his ears. Granted, his ear canals are very small, so it makes it very difficult to see in there real well, but his doctor is very good with him, and if she saw no fluid or infection, I'm sure there wasn't any. That night, however, Kellan woke up at 11:45 screaming and crying. Now, he never cries, let alone screams, so we knew something was wrong. The next morning he had dried, crusty stuff all over his right ear, so I figured that's what had happened. We took him back to the doctor and she agreed, and said it was definetly red and infected. Her office called the ENT we chose and they were able to get Kellan in the next day (she can be up to a 2 month wait to see!) Dr. Kennedy is generally known in Billings to be the Special Needs ENT, and I've never heard a bad thing about her. Justin flies her frequently and also really likes her, and she already knew about Kellan because of this. She did not disappoint me. I liked her before she even came in the room! So Kellan definetly needs tubes (she said his ear drum did rupture and the other has fluid in it) but doesn't necessarily "need" his tonsils and adenoids out. But since all the other kids have had to have theirs out, she said there's about an 80% chance Kellan will at some point, and my feeling is that if he's going to have to undergo general anesthesia for the tubes, she might as well take the tonsils and adenoids while she's at it! They do better when they are younger anyway. He will have to stay over one night in the hospital, just because of the Down syndrome.
Other than all that, Kellan is doing very well. He has his first 2 teeth. I took Kellan to see a pediatrician in Denver at the Sie Center for Down syndrome at Denver Children's, Dr. Hickey, who has sort of specialized in Down syndrome for the past 22 years, and also has an adult son with Down's. It was a great visit, very reassuring. He and his nurse practitioner spend about 1 1/2 hours with us, playing with Kellan, going over his records, talking to me, assessing him. He didn't have any life-changing information or advice, just reassuring from someone who has seen hundreds of babies and children with Ds. He did start Kellan on prevacid for his spitting up, which he had still been doing tons of. Within a week of starting it we noticed a difference. He hardly ever spits up anymore, where he had been at least 8-10 times per day, and significant amounts each time. His appetite has also increased, we are feeding him about double what we were just a few weeks ago!
Kellan started speech therapy in October, and goes weekly to a wonderful therapist named Vicki. She has taught him so many things, it seems like he does something new every time he goes. He is very good at playing peek-a-boo, loves to clap, and imitates sounds. We are working on teaching him signs, "more" and "eat" being the first two. He also loves to give kisses, big open mouthed ones that if you're not careful, he'll slip you a little tongue!! Physically, Kellan is almost sitting up by himself. He stood for about 20 seconds at PT the other day, which is great because his little legs are like noodles! He rolls and scoots around on his back to get where he wants to go, despite the therapists trying to get him to get around on his tummy and learning to crawl. I'm thinking that's not going to happen! None of our kids learned to crawl, until after they walked anyway!
Kellan is ready for his 2nd Christmas. He has already tried opening a few gifts under the tree, and I suspect he will prefer the paper over any toys he may get! His brother and sisters are very excited for Christmas, and I'm sure they will teach him well the art of opening presents!
MERRY CHRISTMAS!!

Christmas Warrior

Our YES Kids group has become a Christmas Warrior for Daniel who is an orphan in Russia awaiting adoption. Reece's Rainbow is a non-profit started by a mom to help kids in other countries with Down syndrome find forever families. These kids live in orphanages, some are well taken care of, some are very poor and left alone in cribs most of the time. At age 3 or 4 many are transferred to mental institutions to live out the rest of their lives in deplorable conditions. It is very sad. The fees to adopt overseas is usually over $20,000, so RR raises funds to go towards those adoptions. We are going to try and add to Daniel's bank account in hopes that someone will want to adopt him if some of the money is taken care of. If you donate at least $35, RR will send you a Christmas ornament. All donations are tax-deductable. Thanks for helping out!!

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Kellans 1st birthday

Kellan eating puffs

Happy Fall!!

Happy Fall! The Schye household has been very busy since school started. It seems like Justin was gone every 2 weeks there for a while, Shelby and Tobin started soccer, her with 2 practices per week, him 1, both games on Saturdays. Shelby is also taking 2 dance classes, and will start girl scouts this week! Kellan and I went to Bozeman in early Sept for their first Buddy Walk. Justin went to Minot a couple weeks later for their homecoming. Then we had our BIG weekend!! October 2 was Kellan's first birthday, and our first annual Buddy Walk! What an amazing day it was! To see all the pics, courtesy of the amazing Ronnie Ruiz, see our website, http://www.yeskids-mt.com/. We met lots of new friends, and had lots of great family and friends there supporting Kellan and us, then some there in spirit! We had "Kellan's Buddy" team, and sold over 90 shirts! Almost everyone at his daycare got one, and they've been wearing them lots since then! Such a great show of support. The event as a whole sold over 500 shirts! Pretty amazing for our first year!
We celebrated Kellan's first birthday with family and friends at Fuddruckers. Kellan got lots of great gifts, spoiled as he deserved!
Morgan is busy with senior year happenings, looking at colleges, and work. She also is a huge help to me when Justin is gone, so she stays busy!
The 3 youngest and I went to Anaconda this past week. I taught a class in Butte at the hospital and my cousin Terri took care of the kids for me. Terri and her family just moved there from WI, and another cousin Shelley and her fam just moved there from Northern MT. It was great to be able to spend time with them both. It's such a pretty area, I can't wait to go back. Plus, Shelley is a nurse at the prison, so I can't wait for my personal tour!!
More excitement to come in our house-Shelby and Tobin are both getting their tonsils out in a little over a week! I'm so excited, esp. for Tobin, he has so many throat and breathing issues. Shelby is the strep queen, but Tobin suffers more with stuff that can't be treated, except by getting them out! Hopefully it all goes smoothly. I took most of 2 weeks off, Justin took surgery day and the next so we'll see!!
Check out Kellans videos!!

Kellan eating puffs

Kellans 1st birthday

Tobin, Morgan, Shelby and Jenna loving the lake!
First day of school!

Our sleeping beauties!! This is why we got a king-sized bed, right honey??

Kellan lovin' his mum mum!

Boatin' baby!

Summer is over, school has begun. Tobin is loving kindergarden, loving riding the bus, but refuses to eat hot lunch! Oh well, not exactly great for them, so I just have to remember to pack one for him. Shelby loves school of course, and is happy with anything that comes her way! Morgan even somewhat like school this year. She is a senior and has several classes she really likes. Kellan and I are enjoying some quiet time together, but the day goes by soooo fast!! Shelby starts soccer this week, dance next week and youth group soon. Tobin starts soccer this week too, and a good friend of ours is his coach, so he's pretty happy! Kellan is growing and progressing, we are still working on sitting up, which he's getting stronger every day. He's also working on crawling and standing. We taught him to pat-a-cake, which was very rewarding, still is, every time he does it! He can pick up a little bit of food but can't quite get it in his mouth yet!

We made 2 trips to Ft Peck/Glasgow this summer as a family, and then Justin took the middle 2 kids one weekend and I took all the kids when I went to Havre for the fair. Kellan did pretty good on the boat, we found a life jacket that he could reach his thumb in, but I admit I cheated and unzipped it and took one arm out for him! He liked that better! THe kids had a blast boating, tubing and swimming! We enjoyed all our time with Justin's grandparents, and hope we have many, many more trips to see them!

The Buddy Walk is in full swing and gaining momentum, which I am loving. We have several potential sponsors, with my employer already committing to us! I love to see the love everyone has for our Kellan and other special kiddos! We have had a great response from family and friends, I think I have 40 ish to order shirts for on Kellan's team!! YAY!

Enjoy the pics!!

So there I go again, being delinquent!! It has been a busy summer! I have been working on starting a support group for parents of children with chromosomal disorders which I have named Yellowstone county's "Extra" Special Kids, or YES Kids. The website is www.yeskids-mt.com. Check it out. Not alot there yet, but there will be!! Billings 1st annual Buddy Walk will be October 2, Kellan's first birthday! Go to www.buddywalk.org for more info.
Kellan made his first trip up to Ft Peck last weekend. He wasn't too fond of the boat, as he had to wear a life jacket that made it impossible to get his thumb into his mouth! But the fresh air lulled him to sleep and he took a great nap!!
Justin and I took Kellan to Denver in early June to see the physical therapist that specializes in Downs. She was very impressed with his progress. He still is fairly delayed, but continues to make great progress!! He still does PT and OT each weekly, so that helps alot, I never find enough hours in the day to do as much therapy with him as I'd like, Justin is much better about it than I!
Kellan also went on his first camping trip a few weeks ago. He did very well, he and I slept in cousin Shelleys camper. It was nice to have mostly the whole family on my mom's side together.
I posted a new video of Kellan on youtube, he's in the bath, it's pretty cute! Search my name and it should list all my videos.
Hope you all are having a great summer!!

Patience

I have been very deliquent in updating my blog. It seems like there are not enough hours in the day to accomplish everything I want! I am not a very patient person, I want things done NOW! Kellan has been very good for teaching me to be more patient. He just takes his time and accomplishes things at his own pace. For instance, I remember back in January telling the physical therapist in Denver that I was frustrated that he was still having such a hard time holding his head up. I laugh at myself now, as he is almost 8 months old and just really getting to the point where he has good head control! So I have slowed down, learned not to expect too much of him, knowing he'll get to each thing, reach each milestone, just at his own pace. And that's ok. Then he surprises us by doing something really well, that we didn't expect. Like yesterday, his occupational therapist decided to try him with a straw. He won't be able to use a sippy cup, due to the tongue thrust that goes along with it, so he will learn to drink through a straw. He did amazing!! Like he knew just what to do! I was so proud of him!
He is still just a little guy, but growing more attentive every day. His stamina has also improved greatly. He can make it through a whole hour of therapy without complaining, and then not sleeping the rest of the day! He has mastered playing with his feet, and even sucking his thumb at the same time! So sweet!!
In other kid news---Shelby is about to end her 2nd grade life, and is in a play tomorrow that she is the story teller for and VERY excited!! Tobin is graduating from preschool tomorrow as well, and he is pretty excited to sing for us! Morgan is one year from graduating! Oh my! She is already talking about senior pictures! She has a job at the younger kids' daycare-Tobin likes having her there! Justin and I and Kellan are headed to Denver next week-Wed-Sun. Kellan sees the PT on Thurs then we are just going to hang out and relax!
Check out Kellans video-it's pretty cute!

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6 months old baby boy

We celebrated Kellan's half birthday last Friday by getting his pictures taken and dinner at Olive Garden, where he dined with his girlfriend Kaydence. I can't believe how time has flown by, and Kellan has grown so much. I uploaded a bathtub pic from last week and one from his first bath, at about 3 weeks old. What a difference!
Kellan is still working on holding his head up, this has been his biggest challenge thus far. He is getting much stronger and can push himself up on his arms while laying on the floor on his tummy. He is a rolling maniac, he will roll to both sides from his back to belly all the time, then push up on his arms and look around. I think he's doing his own therapy!! His biggest milestone the past couple weeks is that he is now laughing! Not too much of a laugh, but enough to tease me and make me make a fool of myself trying to get more out of him! He talks up a storm still, adding new sounds all the time. We started feeding him cereal, which he LOVES!! And he does sooo well with it, we were all pleasantly surprised!
Our little friend Jack continues his battle with cancer. He is in remission, which is great, but will still need chemo for the next 5 months or so.
Kellan has a doctor appt next week, so I am anxious to see how much he is weighing these days. We'll also check his thyroid again, the Ds increased his risk of thyroid problems, and just for mommy's sake a complete blood count! The following week he see an opthamologist. Children with Ds have a greater chance of needing glasses, so they get checked earlier and more frequently.
All in all things have been fairly quite in the Schye household. Morgan went to her prom last month, looking as beautiful as I've ever seen her. She continues to be my life saver with as much as she helps me out with the little ones. I don't know what I'd do without her. Guess I better not have any more babies, as she'll be gone in a year and there goes my helper! Although I'm not sure how she'll leave her little Kellan!
Shelby and Tobin went with Justin to Glasgow Easter weekend and had a great time with great-grandparents Maas. Shelby is starting soccer, has her first communion and confirmation this weekend. Tobin is gearing up for preschool graduation and hopefully kindegarden in the fall!
I hope everyone is as ready for spring as I am, and praying for warm non-windy weather~!

5 months old

Tell me he's not the most handsome pilot ever!!

Chillin' with Momma

Check out that hair!!


I can hardly believe Kellan is 5 months old already! He had a doctor appt on Wednesday and weighed in at 11 lbs 11 oz! He is starting to wear 3-6 month clothes and outgrowing size 1 diapers. He is getting very strong in the neck and holding his head up fairly well, but still has some work to do. As soon as he can hold his head up, we'll start feeding him cereal. At the first of this month, as I realized Kellan was approaching his 5 month birthday, I had a big dose of reality, just how delayed he is. I'm usually very careful not to compare him to other babies, or even his siblings at this age, but it's impossible to not think about it sometimes. Kellan's occupational therapist, Linda, set up a mom's and babies play group for her clients with infants and toddlers with special needs, and that has been wonderful. One of my best friends from grade school thru high school, Suzanne, her little sister has a 2 year-old boy with tetrasomy 18, a rare genetic disorder that results in delays. Anyway, they come to the group so she has been great to talk to. She said the reality checks are a part of life now, and we just have to accept that. There is one other mom with a little boy with a brain malformation, and then Piper and her mom. Piper is the little girl just older than Kellan with DS. One other mom and boy that will come eventually are the ones that are in Denver, because little Jack has leukemia. I'm so thankful to Linda for setting this up for us. Next month we may even venture out to lunch first-God bless the restaurant we pick!!







I was directed to a blog by my husband, who found it off a friend of his wife's blog, and wanted to share it with anyone who would like to read it. Her name is Kelle, and she has a baby girl with DS...well, I'll let you all read it for yourselves. Warning: have a box of tissues handy. http://www.kellehampton.com/2010_01_01_archive.html



This so could have been written by me, well I can't express nearly that well, but the thoughts, feelings, are all so similar to my own. It's amazing how connected I feel to her, and I don't even know her. Some day, I will write Kellan's birth story.







Have I said how much I love this little boy?? He is so precious, growing and developing such a personality! Today I had a massage and he talked and cooed the entire 30 min!! We decided he remembered hearing the music and smelling the relaxing scent of oils, and was just plain happy. And he knew his momma was too!! Every time I get out the camera to take a picture of him smiling or video of him talking, he instantly turns serious and looks at the camera intently, silently! Like he's saying, no mom, I am too camera shy!







Today I got to spend the entire day with him alone. Justin's parents took Shelby and Tobin for the day, which was awesome and much needed! We took a long walk and just sat and cuddled. There's something about a baby that is so good for the soul.







Well, enjoy the pics, and Sarah and Aimee, thanks for visiting my site!!

Airplane trip #3

Kellan had an eventful week starting with a visit to an Ear Nose and Throat doctor, which really was a waste of time. He had been having such terrible congestion that began when he was 2 weeks old and really got worse the beginning of January. Worse to the point he could barely breathe, especially at night, and I was not sleeping, scared he'd stop breathing. So one of the pediatricians consulted the ENT and put him on an antibiodic, sudafed, and a different anti-acid medicine. Within a few days he was way better-back to where he was before Jan, not 100%, but we'll take it!. Wednesday Kellan woke up with torticollis and tortipelvis-where his whole body is in a "C" shape. We pretty much left him alone, didn't try to straighten him out, and after a nap at Aunt Maries he awoke just fine. Thursday was our trip to Denver for physical therapy. I could very easily get sick of flying with an infant! Getting through security is a nightmare, thank goodness for other passengers! Shannon, the other mom I go with, and her baby Piper, and Kellan and I must be a sight! We just laugh. We rented a car, and getting that back and Shannon dropped off by the shuttle was slow so we almost missed our flight! Well, that and we stayed last at the hospital meeting a new friend. My mom works with a man whose grandson has Downs and was diagnosed with leukemia a few weeks ago. They are in Denver, so we went to visit Jack. He is one handsome boy and what a trooper!! He is my newest hero! We enjoyed meeting Jack and his mom and dad, and spent some time visiting. If everyone could keep them in your prayers that would be great!

Friday was not a good day for Kellan. Justin's morning flight was cancelled so Kellan stayed home with him while I went in to work for a couple hours. He called me saying that Kellan had been unconsolable, screaming, crying for an hour. That is VERY unusual for Kellan, who almost never cries. He got him to calm down some and brought him to me at a friends house. He ended up sleeping for a while then woke up just fine, so I don't know what his deal was, but glad it was over!!

Kellan has a doctor appt Tuesday, so we'll see how much weight he has gained, I know he's getting longer!!

The picture is of Kellan reaching for a toy-something he learned after our last trip to Denver. His PT was very impressed when I sent her this pic! Now he has moved on to learning to play with his feet! I'll post pic when he is able to do it!

BPT it is

I talked with the doctor from Boston Medical Center last Friday and he wanted some additional information about Kellans episodes, which I emailed to him. He then emailed me Monday and said Kellan "almost certainly has" benign paroxysmal torticollis. That combined with my 99% sureness that he was never having seizures is enough for me to breathe easier and say with confidence that this is BPT. This is a relief for me in that I am glad these are not seizures. But the downside is that there is no cure or treatment for BPT. Dr. Rosman assured me that it almost always goes away by the time they are 3. He has not had an episode since Christmas Day. Dr. Rosman did say he would like to see an EEG during an episode just to eliminate that small possibility that these are focal seizures, which he wonders about because of the eye deviation during the episodes, which he said isn't typical of BPT, although on the blog Justin found, several of the parents describe similar eye deviation. Our local pediatrician is in agreement with us on this and just thought that if he begins having numerous episodes then we would try to go to the hospital for an extended EEG, like they suggested in Denver. I am so grateful to Dr. Rosman. For him to have helped us like this is truly amazing, I know how most doctors are!!

So Kellan has been off his anti-seizures meds for a couple weeks now and is doing really well. Cooing more, smiling more-I even got a picture! I took him to Denver last Thurs to see the physical therapist that specializes in treating kids with Ds. She is amazing!! She got Kellan to reach for a toy! I was so proud of him! I videotaped most of our therapy so Justin could watch, and so I could remember what she wants us to do with him. She would like to see him monthly until he walks, then much less frequently, like every 4-6 months. We'll have to see with insurance and all, but I sure would love to take him to her every month.

Justin and I meet with the genetic people from Shodair next week. Not sure what all they'll tell us, but should be interesting. I got on the computer at work and printed the chromosome sheet they did, and sure enough, there it is, that little 3rd one on #21. Weird to see it.

I hope you enjoy the picture. Kellan is a great cure for a bad day!!